Second lap found no endo but some adhesions. Need some advice please!! Sorry it's so long!!

I was diagnosed with endo 2001 by a lap with also a fluid sac within my tubes & poss pcos. Afterwards I was put on Zoladex injections for 6 months and then had Ivf in 2004 which helped me to have my twin boys who are now 9. My pain was a lot better initially but my cycle was anything between 21 & 60 days. I tried going on the pill but ended up bleeding for 6 weeks solid & get terrible headaches/flashing lights so came off it. Don't know if was contradicting with my thyroxine tablets. The pain up until this year has been bearable so I decided to try to not take hormones, it was only 2 days around ovulation & 2 days when I was on & could be controlled by normal strength paracetamol. Since July it has been really bad & every day, my bladder has been effected too as well as being constipated.My ovaries feel like they are been squashed & have really bad pain right across my pelvis. My stomach looks like I'm 3 months pregnant and I've had to buy bigger jeans. I had an ultrasound scan & they found nothing but it was very painful as I have a tilted womb. Last smear test was unbelievably bad & bled for 2 days afterwards.I had my 2nd lap on 6th Nov & nurse told me afterwards that I have no endo & only 2 adhesions that were fleshy. I'm not sure what that means?? Apparently I am now discharged and have to see my dr so I have got an appt on 25th. I really need some advice on what I should do next for when I talk to the dr. Thanks.

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4 Replies

  • Did they cut back the adhesions in the lap and put in barriers to stop the regrowing adhesions gluing things together again?

    Unfortunately much like endo- there is no cure for adhesions. They can be a real nuisance. They are protective cushions and your body will always need to be able to create scars to help you heal, so the only thing you can do is to have them periodically cut back again..but each surgery also encourages more adhesions to grow.

    There are some homeopathic remedies around for handling adhesion growth with special exercises. not sure how they could help that much, but it might be worth doing some digging on line to see what you can find out about ways to deal with adhesions.

    Everyone can get them after any tummy trauma, not just us endo ladies.

    As for the tilted womb- the vast majority of us endo ladies have a tilted doesn't cause trans-vaginal ultrasounds to be more painful than regular tilted wombs.. but any adhesions tightened round the vagina or cervix like a corset can make having a speculum inside you absolute agony.

    Next time you need such a procedure, ask to be referred to the hospital where you can have entonox (gas and air) while they use a speculum. And take pain killers before hand.

    It does take some of the pain away...but you will still be in a lot of pain and still need pain killers for a day or more afterwards.

    It is the only way for some of us to get through the process it is sooooo painful. I absolutely hate smears more than anything else, because of the pain it causes.

  • Thanks so much for your advice. The treatment I received at my local hospital was not good. They just told me they'd found some but acted like this was nothing as no endometriosis was discovered. The discharge papers say everything is normal so obviously I've been v upset as feel like it's been for nothing & the pain is still there.

    I'm going to look online for these exercises as well as losing some weight. Trying to think positive right now & just get a bit more healthy.

    Do you think it's worth a getting a second opinion?

  • I too find smears excruciating - I had a Mirena fitted during a lap and then had an excruciating experience when they tried to remove it but couldn't get to it. I was told I would have it removed under sedation but the hospital gave me none - it was really traumatic and they still couldn't get it out. Ended up having a general.

    There are a few possibilities regarding your lap being clear of endo:

    1) The endo has been suppressed by pregnancy / hormonal treatments - unlikely due to time involved.

    2) All your pain was being caused by the adhesions and you have no active endo - which is possible

    3) You do still have endo but they didn't see it - sadly also possible

    I've had five laps and two were supposedly clear - the first one because they didn't know what they were looking for, and the second because I'd been on Depo and hadn't had a period for over a year.

    Endo doesn't always have the classic appearance - mine is clear and orange, looks like small blisters - so it took a specialist to diagnose the extent of it.

    It could be that the adhesions were causing your symptoms - if they removed them, give yourself a few months to recover and see if things improve. If not, ask for a referral to an endo specialist. Ideally you want to limit surgery which could worsen your adhesions, so maybe another course of zoladex could help?

  • Gosh that sounds awful! The doctor was trying to get me to have one fitted before I saw the consultant. I really suffer with headaches when I've taken hormones since having the kids, so was very unsure about having something done that I couldn't just stop if side effects got too bad. Did you suffer with yours?

    I'm seeing my doctor on 25th so will see what she says about treatments that are less invasive than surgery. I've had 2 laps, gallbladder surgery & c/section since 2001 so maybe it is adhesions from all that.

    Just want to better now - seem to have a permanent seat in my doctors!

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